ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Joey on October 03, 2008, 12:17:21 pm
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Hello everyone again - I had my GK yesterday at Mayo Clinic and I am happy to report I'm doing great so far. Wed. was a day filled with appointments there, plus a meet and greet with the radiologic people that would all be there, the complete team. I was nervous the evening before but managed to sock away a nice dinner complete with the chocolate raspberry cake at the Canadian Honker restaurant across from the hospital I'd be approaching at 5:30 am the following morning. I was awake from about 2:30 on, so no problem getting up on time. I arrived at the hospital, was taken to the appropriate floor in a timely manner, shown my room and instructed to change into gown and long pants (the radiation oncologist had warned me that sometimes people are given no pants and to be sure and ask (!) for them, "because we neither want nor need to see all of that".) Anyhow, I was taken then to the GK suite and had two wonderful nurses that helped me through a mini meltdown. I had been given adavan to calm me, plus something nice in an IV, so I was a bit loopy. After swabbing my entire head/face with alcohol, Dr Link and a Dr. assisting had my headframe on in about 3 minutes, and both were good about keeping me calm and breathing. The headframe was not at all as bad as what I built it up to be, funny how that happens. I was able to move around ok and could use restroom alone even. I took a Dean Koontz book to keep me busy, but there wasn't much downtime. It all went fine; I had an MRI and then a CT; then the team took about a half hour for planning before the actual treatment. The machine looked a bit like an old fashioned hair dryer to be used while you lay down. After the team helped me gently down and bolted everything into place, they left the room. I was monitored throughout the 45 minute treatment, which went quickly and I think I slept through some of it. Strangely, radiation is just the quietest thing. I only heard sounds briefly as the machine was either moving, or the frame was moving, I'm not really sure which. At the end of the treatment, chimes sounded, and it reminded me of church bells. They came and helped me out and sent me back to my room, after doing the big headwrap. I hung out in my room for about 2 hours until nurse was satisfied I was doing fine. My husband brought me a gorgeous plant, and I ate the most bland cheese sandwich I have ever had, but let me tell you, I was starving. I left hospital at 12:45 pm!! So all is well. My one pin site is a little sore and oozy in front, the back ones I can't seem to find. I am kinda tired and dizzy at times, but not bad at all. I have to say that Mayo is world class in my book, I was treated like a princess from start to finish. Well, gotta go for now. Hi yall, Joey
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Hi, Joey:
Thanks so much for the informative, entertaining post with the news that you've successfully completed your GammaKnife treatment at the Mayo Clinic, a world-famous medical facility. I'm so pleased to learn how well things went for you and that none of your fears were proven valid. I trust your recovery will be as quick as it is smooth and complication-free. :)
Jim
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Wonderful news, Joey ;D
Glad everything went well.
Thanks for the update,
Jan
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I'm glad to hear that your GK went well.. ;D
Keep us posted on how your feeling in the future.....POSTIE ;)
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Congratulations Joey, I am wishing you the best. Keep us posted as you recover.
Marci
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Hi Joey,
Good to hear that everything went well. Sorry about the cheese sandwich.
Now lets hope you have a smooth year ahead, with little or no funny business along the way, and a great result on your next MRI.
Steve
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Hey Joey and congrats for being a toastie-postie! :) You did it and now, onward and upward to wellness.... Let's get that brain booger dead!
Congrats!
Phyl
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Hi Joey,
Thanks so much for your post. I was supposed to be right behind you with my GK on the 7th, but I have been rescheduled to Oct. 21st. I appreciate the walk through of your procedure, and I am glad everything went so well. It is very encouraging, and I am looking forward to walking out of the GK room with success just as good as yours.
Best Wishes,
Nancy ;D ;D ;D
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Nice to see you are doing so well and perhaps your post will help those deciding how best to treat their tumor.
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Hi Joey,
Its good to hear your treatment went well. Great to know it wasn't as bad you feared either, it gives hope to those of us still deliberating our treatment options!
Wishing you a speedy recovery
Hannie
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Thanks everybody for the well wishes, I'm still home and doing fine. I forgot to tell you that the radiation oncologist told me beforehand that most all the side effects would be related to the headframe/screws/application...... not entirely true, but somewhat. I sorta feel like I've been sideswiped by the mega flu. But I'm up and around and made a cake even. Walked the dogs a little. But I'm still in jammies mode and plan to have lunch and a nap now! My stomach seems unaffected by this. Just don't have the energy I normally have. Did anyone else notice a persistent numbness in the top of the head? It still feels like a combination of a Charlie McCarthy doll head - or the top of an end table. Hello from the couch!! Joey
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Hi Joey,
I noticed a numbness on the left side of my head. It was also at the top of my head mainly. It went away after several weeks. I now can no longer tell a difference between the left and right side of my head which is good. Good luck to you in your recovery! I wish you the best!
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Hi Joey,
Congrats on getting through GK. The numbness, as I understand it, is due to the injections that they give you to numb your head before putting on the headframe. It sort of moves around causing numb spots here and there on your head. Very weird, but it does eventually go away. Why it stays around for so long is a mystery to me. I had a huge dent on one side of my forehead, and I was afraid it was permanent, but that finally went away too, after many weeks. But then, I'm older, and I suppose my skin doesn't "snap" back like it would have when I was a mere lass. Are you on steroids? Being tired is very normal. I felt like I'd been drug through a knothole backwards for awhile. It will probably take a little while before you feel 100%. All this has to do with your general physical condition, your age, your level of activity, etc. But knowing that you have just kicked that darn AN in the keister must make you feel like "Rocky" about now.
Cue the Rocky music and run up those steps! (after your nap ;))
Sue in Vancouver, USA
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My left pin site (opposite to the AN) was very sore, right from the beginning. They had to inject more of the numbing stuff to it while they were screwing the frame in, and at the end of treatment it was bleeding quite a bit.
I had some numbness on and off on that side, as well as weird feelings on the bone for a few weeks after. Fortunately it was the opposite side of the AN, so I was positive it was due to the frame and not to some scary radiation effect.
The right side healed right away, whereas the scar on the left stayed for months and it has still not totally disappeared.
The only other minor side effect that I had right after treatment was some swelling on my forehead (barely noticeable), which lasted a few days. I should have read the instructions that they gave me, where they suggested to do cold compresses after treatment.
Marianna
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;) Hey there. I have to report that today I am feeling pretty good overall; no flashing weird nerve pain, not quite as fatigued as noticed the last few days. Before leaving the GK suite, I was given what was referred to as a "special shot of a steroid", at which I must have looked alarmed..... Dr. Link assured me it wouldn't cause the insomnia and other unpleasant side effects, so in my IV it went. It was supposed to help with potential swelling issues. Parts of my time during that procedure are now kind of hazy, but I do remember the administration of drugs. I also remember complaining that the back part of the headframe application was hurting like the devil, so I believe I got an extra shot of Lidocaine. Today my head feels much the same, numbness wise. It is an interesting sensation, because I can just touch one spot - and feel a weird current type sensation go through an expanse of skin. Difficult to explain in its weirdness. But you all know what I'm talking about, right??? Also, my forehead is behaving like the effects of Botox right now. Can't quite raise my eyebrows yet, but that's unimportant. I am thinking maybe tonight a Corona with a wedge of lime to celebrate being slightly closer to normal! Ha! Later, Joey
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Hi Joey,
Congrats on getting through GK. The numbness, as I understand it, is due to the injections that they give you to numb your head before putting on the headframe. It sort of moves around causing numb spots here and there on your head. Very weird, but it does eventually go away. Why it stays around for so long is a mystery to me. I had a huge dent on one side of my forehead, and I was afraid it was permanent, but that finally went away too, after many weeks. But then, I'm older, and I suppose my skin doesn't "snap" back like it would have when I was a mere lass. Are you on steroids? Being tired is very normal. I felt like I'd been drug through a knothole backwards for awhile. It will probably take a little while before you feel 100%. All this has to do with your general physical condition, your age, your level of activity, etc. But knowing that you have just kicked that darn AN in the keister must make you feel like "Rocky" about now.
Cue the Rocky music and run up those steps! (after your nap ;))
Wow, Rocky!! Loved that 80's reference, and yes, I am much stronger than I thought.... actually, the ENT I first saw at Mayo encouraged me to be as active as possible, to help with the balance issues, which I think was sound advice. I am pushing myself to do a little more today, like real clothes maybe. Do you suppose Sylvester Stallone is single again???? :D
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:) Well, one week ago I was in the GK machine at about this time - and now I am back to work and doing just fine, other than the numbness feeling at the top of my head. Yesterday I took a decent walk and drove myself into town, just to be sure my reflexes were all good. And I feel great!! tumor be gone....... or a bit smaller, at least ! Joey
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Hi Joey,
Sounds like you are doing really well. Every day, a little better, though sometimes it goes unnoticed.
Best,
Marci
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hey Joey,
I'm so glad to hear you are doing better this week. You sound really positive too!
Hannie
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Hi Joey,
So happy you are feeling better! Yes, all the weird things that we experience are difficult to describe. I do think we have to come up with a whole new AN language to explain what we feel, don't you? We already have Wonky Head, so we're on our way to our own vocabulary.
Take care,
Sue in Vancouver USA
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Sue,
I'll have to add AN ear, nonAN ear, ANers, PM, GK, CK and maybe some others I can't remember right now. When I am talking to my nonAN friends and use these terms, they say whattttttttttttttt????? What is wonky head? Is this something I should worry about?
Joey,
I am glad you are doing well. I hope to have something positive to add here on Oct. 21st--my big day. Keep updating. It helps.
Nancy
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;D Hey Nancy - Glad to know it helps, sometimes I think I'm a little boring~! I am glad to be of some use, that's for sure. Things are really looking a little better every day. My hearing seems to be hanging in there. My hearing test the day before GK revealed even more improvement - still from the steriods?? I'm not sure, but I was certainly surprised - I had 100 % "word recognition" in both ears even, with "mixed low level hearing loss in the left ear" so I am hoping we chose this tumor attack at a good point in time. I also had a perforated eardrum in that year, from an old ear infection, so they think my hearing is interesting. I rec'd a copy of the operative report from Mayo, listing how much radiation I received, so I will have to come back and explore things on this site more, as I don't understand the techno-jargon used on it. Apparently there are different amounts applied to the tumor and then to the tumor margin. Some days I think there is a definite fullness feeling in that area, but then again, I had that before..... I am thinking positive thoughts and I'll keep checking in! As my care nurse said, remember - "nothing will be as bad as you think it is"... and I was pleased to tell her later that she was right. Of course I was on a happy little high from the drugs - and from being done with GK. I will keep updating so that others remain encouraged, too. Take care, Joey
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Hey Joey, Glad to hear that everything is going well so far. I don't find you boring at all. I am ready for any news--the good or the not so good. I just talked to the nurse at the GK center awhile ago, and now it is all seeming real. A week from tomorrow I will be in happy land. Keep posting. Nancy ;D
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Hi Joey,
So glad to hear of your progress. I am cheering for you.
Mary 8)
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Hi Joey,
I hope things are still going well with you Joey and all the rest of you. I am just three days away from GK, and the nerves are kicking in. Interested in what you GKer and others as well felt a couple of days before treatment. I can't sleep, my stomach hurts, I can't concentrate, and sometimes I just want to hide so people will just leave me alone. Is this normal? I know my AN is small so that is a good thing, but I do have worries about having made the right decision. I am not backing out, but sometimes I feel like a "chicken". I am keeping busy, but my mind wanders sometimes. If nothing else, I am ready to get GK over with just so the anxiety of waiting will go away. All of you GKers seem to have positive reports with fairly minor issues that seem to get better over time. Comforting to hear what all of you have to say. Thanks!
Nancy :o
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Joey,
I am glad everything is going well for you.
Nancy,
It is normal to feel nervous before treatment, who wouldn't, no matter if it is microsurgery or radiosurgery. Keep focusing on the potential for a positive outcome; all treatment methos nowadays have very high rates of success.
For what it's worth, I was a nervous wreck before treatment, because of all the conflicting last minute opinions ( must have lost 5 pounds the week before because of the stress). The procedure itself was tiring of course, but afterwards I felt fine, and after a nap I had a nice supper at the hotel we were staying and was able to go for a walk. Overall, I would say that it has been a breeze since then, and I didn't have any issues. I have my 6 month follow-up appointment coming up on the 28th, so I am waiting to see what the doctors will have to say.
We will keep cheering for you, and I am sure everything will go well.
Marianna
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Hi Nancy,
it seems normal to me to be nervous before a major medical treatment, and to wonder one last time if it is the right decision for you. Your AN is on the small size, so you will be getting less total radiation than some, and should come through with flying colors. Hang tight, you are almost there.
Steve
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Thanks Steve for the support. So, it sounds like I won't be "glowing" when I leave the GK center ;D ;D ;D. It is a beautiful day outside today so I am on my way out to enjoy the sunshine. Anything to calm the nerves. Nancy
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:) Nancy Girl: Hey, wish I was there to give you the send-off hug, but - consider yourself hugged! You will do just fine, and remember that this will not be nearly as bad as you think. It will go quickly, then you get a little down time. Reach inside for peace and calm and strength, rest assured it is there when you need it. I will be thinking of you and praying for your positive outcome, which by the way, I'll be waiting to hear about. Take care and bear in mind how good it is we are choosing to take charge of the situation and get this taken care of so we can go about life. I'll be toasting you on this end. ~Joey
PS And I'm still doing good. Ear feels full occasionally and still the buzzing and humming, but not bad overall.
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Thanks Joey and All,
First of all Joey, I am glad you are doing well. I am in a good space today. I have slept good the past couple of nights, and the massage I had today was a wonderful present to my body! I am feeling very positive and am anticipating an excellent outcome. The anxiety of waiting is very close to being over, and I am ready for the tumor to be zapped. May it die in peace!!! I hope you continue to post Joey. The updates have been very helpful, and I appreciate any feedback you have to give. People are here to help us all. If I don't give an update tomorrow, I will give an update on the 22nd.
Nancy
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Hi Joey and Nancy,
I'm really glad, Joey, that you are doing great. Yeah, that head thing is weird and I was surprised at how long that lasted. Eventually it just fades away. Eventually.
Nancy, hang in there, girlfriend! Yeah, I think exercise would be good for you now - walking and being outside if you can and just keeping yourself occupied to burn up some of that nervous energy building up as you anticipate the big day. I don't really remember if I was anxious or not. Well, I was, but I didn't have that long to worry about it, because my GK was scheduled only a month after my first diagnosis. Like everybody else, I was anxious to get it over with and to get that dang thing killed.
Sue in Vancouver USA
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Hi Sue - the head thing is gradually fading, somewhat - at the end of the day, my whole cranium seems just sore to the touch. I don't even notice the front pin sites anymore, but the back ones hurt a little bit yet, which I noticed when sitting in the dentist chair yesterday. No big deal! The really interesting thing I have noticed: I am now sleeping like a trooper, yes, all night long. I had been sleeping up to now, with the assistance of pills, and not great quality sleep either. So, it could be just now some residual tiredness from GK - or quite possibly, I'm just not as stressed out about things at the moment. It is so good to log my 7 hours of sleep again, I'm sure it's making me nicer to be around. I'm certainly happier. Just an update! Joey
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Joey,
All sounds good for you. I had GK in Dec 2006. I had no problems then or now. Congratualtions!!!
Grace
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.....patting you on the back
Hooray I'm glad you are doing so well! ....raises glass to propose a toast Have a GREAT life!
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Hey again - Thanks all for your well wishes - I have been lurking here, hesitating in posting this as it is not as positive. :-\ I have been seeing some issues in the last week. On the AN side, there is a strange facial twitch. It started with the eye itself... however, now it seems to be the eyebrow area and sometimes it's just a weird flutter - ANYONE??? Also, I did check in with the Dr. due to some notably increased dizziness I have noticed while at work. They are not alarmed and I have been told to take the maximum dose of IBU, which I'm doing. Luckily the vertigo seems to pass just as quickly as it comes; the facial twitch I could do without. I am thinking this is the time that the mental strength comes into play. I also notice that I should be updating my information to reflect my new, twitching status. Positive thoughts are welcome! ~~Joey
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Postive thoughts are coming your way from me. Once you get past these temporary issues, you will be good to go.
Grace
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Hey Joey,
The past couple of days I have noticed some twitching below my eye on the nonAN side. It usually happens at night. I had a scary balance issue four days ago, but it resolved itself in a couple of hours. For several days after GK, I was on some kind of high. The fatigue is setting in now, and like you, I also think this is the time for the mental strength to come into play. I have been lucky with the pin sights. They only hurt when I push on them. The ones in the back hurt more than the ones my forehead. I notice that I am not as steady on my feet sometimes, and I also have noticed that my hearing seems a bit diminished at times....mostly word discrimination. Not of any great concern to me because I am so happy that I came out with good hearing. Keep posting with updates, Joey. You are ahead of me so I am interested in what you have to say. Hopefully you are doing better every day.
Nancy :)
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Thanks Grace, I'm feeling a bit pensive right now, something comes to mind about waiting for the other shoe to drop. I was sitting in court this morning doing the clerk thing, and I'm positive people thought I was winking. I'm learning to compensate for lots of things. We have lots of big open stairways here, and rather than risk a public spectacle falling I just take the elevator down. It is feeling like prickly heat up and down that side of my face. I am one of the lucky ones that experienced other symptoms when my AN was discovered, i.e. sudden complete hearing loss and some balance problems. To now have this suddenly start up is disappointing - of course, I know it could be far worse. I have been cruising the posts about mental strength and I am truly amazed at the strong souls there. I'm trying not to complain, but I've been having a rough time just now. The tinnitus, even though it's a constant, is no big deal compared to this. The headaches and frequent ear pain I have learned to live with. ~Joey
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And thank you, Nancy! I'll post again, rushing right now. Have a great evening all! Joey
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Just try your best to be positive - that other shoe is not going to drop. Take care!
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Joey:
How about an update on how you're doing.
Grace
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Hi Grace, Well, I've sort of put this off because I haven't been the most positive lately, although I'm feeling better now. I was experiencing increasingly weird facial symptoms that prompted a call and then a visit to the Dr. I am back on steriods and it seems to be helping. I also had blood work done and it was determined that I am fighting a virus. They said my electrolytes were "out of whack" and that is partly responsible for feeling crummy. I was also told to rest a lot and scale back on things. Never had facial symptoms before; when they started I freaked out a little and began thinking that perhaps I made a bad decision--- however, I was reassured that this doesn't deem failure and is not abnormal. My eye was really feeling irritated, and they gave me something for that too. I've picked myself up, a bit more educated now - and I'm ready to go on. Thanks for checking. ~~ Joey
And Sue- Wanted to say thanks for your pm, it came at a good time. I did take your advice about the cool compresses and the peaceful thoughts. I bet you are an amazing mom! ~~Joey
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It might be worth taking a look at a recent post by JB, who had some major swelling, and did rounds of steroids to control it. He was mainly experiencing hearing nerve issues, I think. He has some nice MRI pics that show the swelling, and eventually the going-back-down, over the course of a year.
http://anausa.org/forum/index.php?topic=7234.0
Post radiation can be weird for a while, but in general, the weirdness does clear up with time.
Steve
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Joey: Glad to hear that both you and Nancy Drew are doing better. I did not have any problems after GK, so I hope both of you get over these issues very soon. I am going back to Wake Forest on Dec 09 for an MRI 2-years post GK. I will let you know how that goes - which I feel will be good news.
Grace
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Hi Grace,
Thanks for your cheerleading!!! It is always nice to see positive outcomes with GK (and all of you other folks, too). Hope things are settling down for you Joey. I ended up on steroids last week. Really couldn't tell that much of a difference other than they made me cranky, and I couldn't sleep very well. Sunday I went to a play that was very noisy. My hearing pretty much freaked out, especially during the intermission when I was in the lobby surrounded by a crowd. Going into treatment, I had better hearing in my AN ear than I did in the nonAN ear. I notice now (within the past couple of days) that my AN ear is worse. I will call the doctor tomorrow since this is really the first time I have noticed a distinct difference. Maybe steroids are needed again. Thanks again for your support Grace. You give us GKers hope.
Nancy ;D